Abstract
BackgroundIn 2017, the European Commission has launched the European Reference Networks (ERNs), virtual networks involving healthcare providers across Europe. The aim of the ERNs is to tackle complex and rare diseases and conditions that require highly specialized treatment and a concentration of knowledge and resources. The ERN on rare and complex connective tissue and musculoskeletal diseases (ERN ReCONNET) is one of the 24 ERNs approved that aims to improve the management of Rare and Complex Connective Tissue and Musculoskeletal Diseases.ObjectiveThe RarERN Path methodology aims to create a single reference organisational model for patients’ care pathways which, if applied in different contexts, helps to ensure an improved, cost-effective and patient-centred equal care to rare and complex diseases.MethodsStarting from existing standard methods for the creation and elaboration of patients’ care pathways, a specific methodology was created in order to take advantage of the distinctive and peculiar characteristics of the ERNs. Specifically, the development of the RarERN Path methodology involved different stakeholders: health economists, clinicians and researchers expert in rare and complex diseases, communication experts, experts in patients’ involvement and narrative medicine and policy-makers.ResultsThe RarERN Path methodology foresees six consecutive phases, each with different and specific aims. Specifically, the six phases are represented by: Phase 1—mapping of existing patients’ care pathways and patients’ stories; Phase 2—design of an optimised common patients’ care pathway; Phase 3—consensus on an optimised common patients’ care pathway; Phase 4—key performance indicators definition; Phase 5—refinement; Phase 6—pilot phase (optional).ConclusionThe application of RarERN Path to the different disease-specific and geographical contexts would help to ensure an improved, cost-effective and patient-centred equal care to rare and complex diseases across Europe as well as a possible tangible action towards the integration of ERNs into the different European healthcare systems.
Highlights
In 2017, the European Commission has launched the European Reference Networks (ERNs), virtual networks involving healthcare providers across Europe
The object of this paper is to provide a careful description of the RarERN Path methodology, that aims to create a single reference organisational model for patients’ care pathways (PCP) which, if applied in different contexts, helps to ensure an improved, cost-effective and patient-centred equal care to rare diseases and conditions (RCD)
Starting from existing standard methods for the creation and elaboration of PCP, a specific methodology was created in order to take advantage of the distinctive and peculiar characteristics of the ERNs; the integration of the perspectives of large communities of patients, expert clinicians, health economists and healthcare providers from different European Union (EU) countries surely represents a real innovative approach towards the creation of organisational models of PCP for RCD that are integrated, flexible and adaptable to the different health systems in Europe
Summary
In 2017, the European Commission has launched the European Reference Networks (ERNs), virtual networks involving healthcare providers across Europe. The aim of the ERNs is to tackle complex and rare diseases and conditions that require highly specialized treatment and a concentration of knowledge and resources. In order to address the current challenges, the European Commission has launched an important initiative that, starting from March 2017, has established the European Reference Networks (ERNs), virtual networks involving healthcare providers (HCPs) across Europe [1]. The aim of the ERNs is to tackle complex and rare diseases and conditions (RCD) that require highly specialized treatment and a concentration of knowledge and resources. The ERN ReCONNET [4] is one of the 24 ERNs approved that aims to improve the management of Rare and Complex Connective Tissue and Musculoskeletal Diseases (rCTDs) across the EU. The ERN ReCONNET involves and engages with patient organizations thanks to the creation of the ERN ReCONNET European Patients Advocacy Group (ePAG) [5]
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